These are not my words, they were from a facebook post I read months ago and kept the words. To the person who really did write the below words I'm sorry I don't know who you are. They resonate and as I found them again last week they made me cry because the truth is real.
Every day I put my make up on, twice a week I put fake tan on my face so that others don't see my dealthy pale face. Every month I get my nails and eyebrows done. I have never considered myself to be vain until this happened. I might feel like the rubbish in the below words but I don't let others see that. For that reason most people think I'm fine, I have to remind myself and some others close to me that I'm not but I will get there, it'll just take a while.
Not everyone recognises having a brain tumour as having an aquired brain injury but the damage caused by the tumour itself and by the treatments, surgery, chemo or radiotherapy, for some all three, can add up to a very serious brain injury.
"I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.
My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.
Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.
I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.
If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!
If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.
Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.
Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.
Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.
Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.
If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)
You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.
If I repeat actions, like checking to see if the doors are locked or the cooker is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)
If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.
We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.
Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without hope."
Thursday, 12 April 2018
Wednesday, 11 April 2018
The brain is definitely working
I've worked my poorly little brain a lot the last few weeks. I've put myself on yet another course, mindfulness this time. I think that once I've completed that the four courses that I have under my belt will set me up for a great future business and that's exciting. Thank goodness for groupon, it keeps having these courses for really good affordable prices, so I can keep studying :)
I've been asked to help a couple of people out with hypnosis, I have a chap who has got terrible sleeping habits and another who can't eat any fruit or veg. I'm going to use them as practise (obviously they know this, I'm not just letting them think I really know what I'm doing). I have worked so hard to get to this point but now I'm being asked to help someone it's nerve racking. This really does mean it's time to start using what I've learned.
I've also been doing the brain training https://www.lumosity.com/ some days I really don't like it because it's tiring but most days I'm doing it and beating my daily scores. Then there's the Spanish https://www.duolingo.com/course/es/en/Learn-Spanish-Online are both free apps that I've been using most days, they really good and giving me the kick up the bum that I've needed to keep going, I don't like missing days on either of these so I make time to slot them in. Finally on my learning is Spanish again, Michele Tomas is a reknowned language teacher, I bought his Spanish course years and years ago, it's great to put on the audio on my phone and listen to while I'm getting my steps in. I am feeling accomplished and maybe a tiny bit smug :) My next step on this is to see if I can find a Spanish group to join, socially I don't know how I'll manage but I think it might be time to try something new.
I've had another benefits assessment this week, this time I am not doing it on my own, my brother (the rottweiler) is my support. He had reams of paper of information. The organisation had already been told by my brother not to send the previous vile assessor as he caused me so much distress that he brought on a seizure. So this time it was a lady and genuinely she was lovely, shocked when we told her about the past experience. As well as the assessment went it brings back all the bloody awful stuff again, listening to my brother explain the security thing that I have to carry around in case of emergencies or how my social life has changed and my life nearly brought me to tears. I'm not sure about how I felt when he told her that some days he turns up to pop in and I haven't even got out of my pyjamas!!!! They are very nice, comfy, warm fleecy pyjamas! That and then my daughters telling me they think it's time I go back to work - I think they are getting bored of worrying about me. I'm bored of worrying about me. I'm ashamed to say that a shitty facebook post has told a few people how fed up I am of them :( (not proud of that at all!!)
So here goes on the medication. I am now taking 2 drops in the morning and 2 drops in the afternoon of the CBD and I generally feel great, sleep well, fog lifting for longer and longer periods of the day. I sleep well too, it seems to take me ages to go to bed as I'm more awake but I sleep like a log. I've also got the balm which I am putting on my scar which honestly feels like it's softening and shrinking. This stuff is literally like magic, I love it so much I'm sharing again https://www.lovecbd.org/ I've reduced my anti depressants to half and am having no bad effects, felt miserable yesterday in the morning after talking to my daughter but that was the conversation not the tablets. My hair is definitely growing thick and fast thanks to silica and vitamin b. So all in all things are improving. I'm still waiting for a neurology appointment but am really living in hope that 6 months free of a seizure will see a reduction in the keppra and 12 months free of seizures will see me keppra free and back to normal life with work, wine and travelling again woohoo.
On that note I'm signing off to do a workout, I've got a bikini I need to shape into :)
I've been asked to help a couple of people out with hypnosis, I have a chap who has got terrible sleeping habits and another who can't eat any fruit or veg. I'm going to use them as practise (obviously they know this, I'm not just letting them think I really know what I'm doing). I have worked so hard to get to this point but now I'm being asked to help someone it's nerve racking. This really does mean it's time to start using what I've learned.
I've also been doing the brain training https://www.lumosity.com/ some days I really don't like it because it's tiring but most days I'm doing it and beating my daily scores. Then there's the Spanish https://www.duolingo.com/course/es/en/Learn-Spanish-Online are both free apps that I've been using most days, they really good and giving me the kick up the bum that I've needed to keep going, I don't like missing days on either of these so I make time to slot them in. Finally on my learning is Spanish again, Michele Tomas is a reknowned language teacher, I bought his Spanish course years and years ago, it's great to put on the audio on my phone and listen to while I'm getting my steps in. I am feeling accomplished and maybe a tiny bit smug :) My next step on this is to see if I can find a Spanish group to join, socially I don't know how I'll manage but I think it might be time to try something new.
I've had another benefits assessment this week, this time I am not doing it on my own, my brother (the rottweiler) is my support. He had reams of paper of information. The organisation had already been told by my brother not to send the previous vile assessor as he caused me so much distress that he brought on a seizure. So this time it was a lady and genuinely she was lovely, shocked when we told her about the past experience. As well as the assessment went it brings back all the bloody awful stuff again, listening to my brother explain the security thing that I have to carry around in case of emergencies or how my social life has changed and my life nearly brought me to tears. I'm not sure about how I felt when he told her that some days he turns up to pop in and I haven't even got out of my pyjamas!!!! They are very nice, comfy, warm fleecy pyjamas! That and then my daughters telling me they think it's time I go back to work - I think they are getting bored of worrying about me. I'm bored of worrying about me. I'm ashamed to say that a shitty facebook post has told a few people how fed up I am of them :( (not proud of that at all!!)
So here goes on the medication. I am now taking 2 drops in the morning and 2 drops in the afternoon of the CBD and I generally feel great, sleep well, fog lifting for longer and longer periods of the day. I sleep well too, it seems to take me ages to go to bed as I'm more awake but I sleep like a log. I've also got the balm which I am putting on my scar which honestly feels like it's softening and shrinking. This stuff is literally like magic, I love it so much I'm sharing again https://www.lovecbd.org/ I've reduced my anti depressants to half and am having no bad effects, felt miserable yesterday in the morning after talking to my daughter but that was the conversation not the tablets. My hair is definitely growing thick and fast thanks to silica and vitamin b. So all in all things are improving. I'm still waiting for a neurology appointment but am really living in hope that 6 months free of a seizure will see a reduction in the keppra and 12 months free of seizures will see me keppra free and back to normal life with work, wine and travelling again woohoo.
On that note I'm signing off to do a workout, I've got a bikini I need to shape into :)
Wednesday, 4 April 2018
So up and down in one week
Hmmmm, so really this week has been partly brilliant and party not so much.
I'll start with the not so much so I can say it quickly, get it over with and then concentrate with the much much better.
So I had another petit mal seizure, this time in front of my grand daughter. Bless her, she knew this happens but this was the first time she saw it, she was frightened and then 2 days later unsurprisingly was frightened to be left alone with me. This made me cry, I absolutely hate the thought that either of my amazing grandchildren would be scared to be with me. They are the two little people that hold me together, make me feel that it's really OK to not be normal and they make me laugh every day and love life. This is the saddest things about this whole stuff that's happened. So that's it, that's the worst part of the bad stuff now it's time to move on to the good stuff.
The petit mal was the fastest recovery I've had, it was the quickest, I knew it was happening because I recognised the deja vu, I lost speech very briefly, I knew I had lost it but my thoughts were still working. Usually it takes me days to get over even a petit mal but this time I was fine about 2 hours later and didn't feel ill or exhausted the next day when I had to back to the hospital for another MRI. I had as always amazing staff to look after me and we laughed together. I was determined not to stay in hospital and I told the nurses that my reason for that was not having enough knickers!
I also saw the biggest chairs I have EVER seen, they are literally enormous, about half the size of my sofa, very comfy though, obviously these have to be provided for the people who can't fit in normal size chairs. I am going to have a Simon Cowell moment and say the thing that everyone is thinking but feel they can't say. It is to the detriment to our NHS budget that we have to have chairs made at a massive expense for people who are too fat to fit in a normal chair. Why should we have to provide this???
The results came back from the MRI on the same day and all is good, no change. It is possible (only a possibility) that scarring from the surgery (and it healing) is one of the 'possible' reasons for the seizures. This gives me hope that once the healing is complete the seizures will stop. This is a hope only but it's one that I am going to cling on to. I am now on 3 drops a day of the CBD a day, one drop in the morning and then 2 in the afternoon. I absolutely have no doubt that it's doing something to help, my thoughts feel clearer, my fatigue isn't so shattering, the fog lift lasts longer. My sleep was never really a problem (except after the surgery with the steroids) but my sleep now is great. I am knocked out within minutes, along with my meditation relaxing music. My brainwork has also been on target this week too, spending time on my Spanish and brain training isn't feeling exhausting. Obviously I am still aware that I can overdo it and I have to be careful. That said I am loving that I can achieve a little bit more every week. I have got another course to start, this time is mindfulness, I feel that this will be the final thing to add to my collection, I feel that once I am up and ready to work again I will have all the tools to achieve what I want to and this is my great hope.
When I got taken into hospital with the petit mal I got to meet a fantastic neuro Dr, she was so lovely but she wants to increase my keppra and gave me some other chemicals meds to take, I have rebelled and am not going to increase the keppra and didn't take the other stuff. Maybe this is a mistake but I honestly know I don't want to take them and I am sticking to that. I have to remind myself that as this is my body and my brain so it is my choice what I put into it. I've started cutting down my anti depressants, I know what I'm doing (because I read how to do it slowly), the Dr says I can only do it with their backing!! bollocks to that I can do this myself, it feels like I've taken control of myself and that feels great. I'm writing this as I'm watch the full monty womens thing and like them I feel like I'm getting my tits out just cos I can :)
I've got today a CBD balm to ease my scar and to see if the little bump on it can go down, it's lovely, smells beautiful. Even if it doesn't work I like it.
I've done a bit more reading about seizures and what to do to reduce them and one of the things as always is diet. There is a lot of talk around about a low carb diet and that having a great effect on reducing seizures. Keto diets and a modified atkins diet seems to be where the most talk is on, I'm not sure I can actually do it though and feel happy and as though it's normal. That almost makes me feel lazy but I am already very careful with my diet and I am happy with it and how I look and feel. So although there seems to be good research and results I think I will pass on that for the time being.
So all in all I think it's been a good week, I am smiling, laughing, doing stuff, feeling braver and moving onwards and upwards. As well as eating my body weight of chocolate and cake because it's Easter! Oh well back to the diet :)
I'll start with the not so much so I can say it quickly, get it over with and then concentrate with the much much better.
So I had another petit mal seizure, this time in front of my grand daughter. Bless her, she knew this happens but this was the first time she saw it, she was frightened and then 2 days later unsurprisingly was frightened to be left alone with me. This made me cry, I absolutely hate the thought that either of my amazing grandchildren would be scared to be with me. They are the two little people that hold me together, make me feel that it's really OK to not be normal and they make me laugh every day and love life. This is the saddest things about this whole stuff that's happened. So that's it, that's the worst part of the bad stuff now it's time to move on to the good stuff.
The petit mal was the fastest recovery I've had, it was the quickest, I knew it was happening because I recognised the deja vu, I lost speech very briefly, I knew I had lost it but my thoughts were still working. Usually it takes me days to get over even a petit mal but this time I was fine about 2 hours later and didn't feel ill or exhausted the next day when I had to back to the hospital for another MRI. I had as always amazing staff to look after me and we laughed together. I was determined not to stay in hospital and I told the nurses that my reason for that was not having enough knickers!
I also saw the biggest chairs I have EVER seen, they are literally enormous, about half the size of my sofa, very comfy though, obviously these have to be provided for the people who can't fit in normal size chairs. I am going to have a Simon Cowell moment and say the thing that everyone is thinking but feel they can't say. It is to the detriment to our NHS budget that we have to have chairs made at a massive expense for people who are too fat to fit in a normal chair. Why should we have to provide this???
The results came back from the MRI on the same day and all is good, no change. It is possible (only a possibility) that scarring from the surgery (and it healing) is one of the 'possible' reasons for the seizures. This gives me hope that once the healing is complete the seizures will stop. This is a hope only but it's one that I am going to cling on to. I am now on 3 drops a day of the CBD a day, one drop in the morning and then 2 in the afternoon. I absolutely have no doubt that it's doing something to help, my thoughts feel clearer, my fatigue isn't so shattering, the fog lift lasts longer. My sleep was never really a problem (except after the surgery with the steroids) but my sleep now is great. I am knocked out within minutes, along with my meditation relaxing music. My brainwork has also been on target this week too, spending time on my Spanish and brain training isn't feeling exhausting. Obviously I am still aware that I can overdo it and I have to be careful. That said I am loving that I can achieve a little bit more every week. I have got another course to start, this time is mindfulness, I feel that this will be the final thing to add to my collection, I feel that once I am up and ready to work again I will have all the tools to achieve what I want to and this is my great hope.
When I got taken into hospital with the petit mal I got to meet a fantastic neuro Dr, she was so lovely but she wants to increase my keppra and gave me some other chemicals meds to take, I have rebelled and am not going to increase the keppra and didn't take the other stuff. Maybe this is a mistake but I honestly know I don't want to take them and I am sticking to that. I have to remind myself that as this is my body and my brain so it is my choice what I put into it. I've started cutting down my anti depressants, I know what I'm doing (because I read how to do it slowly), the Dr says I can only do it with their backing!! bollocks to that I can do this myself, it feels like I've taken control of myself and that feels great. I'm writing this as I'm watch the full monty womens thing and like them I feel like I'm getting my tits out just cos I can :)
I've got today a CBD balm to ease my scar and to see if the little bump on it can go down, it's lovely, smells beautiful. Even if it doesn't work I like it.
I've done a bit more reading about seizures and what to do to reduce them and one of the things as always is diet. There is a lot of talk around about a low carb diet and that having a great effect on reducing seizures. Keto diets and a modified atkins diet seems to be where the most talk is on, I'm not sure I can actually do it though and feel happy and as though it's normal. That almost makes me feel lazy but I am already very careful with my diet and I am happy with it and how I look and feel. So although there seems to be good research and results I think I will pass on that for the time being.
So all in all I think it's been a good week, I am smiling, laughing, doing stuff, feeling braver and moving onwards and upwards. As well as eating my body weight of chocolate and cake because it's Easter! Oh well back to the diet :)
Monday, 26 March 2018
Is it too soon to get excited???
OK so I've read and youtubed until I'm totally brain fogged with information overload. I've seen the stories in the daily mail about the support CBD oils are getting from so many people. I've read the amazing stories of CBD oils and their possible miracles (not really miracles but definately better possible solutions) and I've messaged and chatted to people all over the world to find out their experiences, get their tips and advice and I've decided it's definately time to give this stuff a real go and slowly get off my meds. Please if you are reading this don't take it as medical advice, I am in no way a medical person, I'm definately in no way academic, so much so that I've been sending things to my brother who is much more academic than I would ever be to get his thoughts, he read, laughed and told me he always told me that smoking a joint was good for you! He then told me he used to give it to our Dad!!!!!!! But really, the information is overloading about what strains to take, what product to use and what to avoid.
I hope I've found 3 companies that seem to be brilliant and incredibly helpful. I am putting some links below of some of the incredible stories that have brought me to tears and given me hope that I can be myself again
https://www.youtube.com/watch?v=S9qkYLtAhSQ
http://www.dailymail.co.uk/health/article-4865170/Woman-claims-cannabis-oil-CURED-brain-tumour.html
http://www.dailymail.co.uk/health/article-5523165/Sir-Patrick-Stewart-supporting-boy-given-cannabis.html
The companies I've decided to use which have amazing reviews and are so helpful are below.
https://cbdbrothers.com/
https://www.lovecbd.org/product/800mg-cbd-entourage-oil-spray/ This is what I'm using now
https://www.cbdoilsuk.com/product/charlottes-web-everyday-advanced-500-hemp-extract/
Day 1 one spray at about 11am, no idea why I took it at that time although I do know it should be taken about 2 hours away from the anti seizure meds. I have read just about everywhere that the way to take this is to put the drop (or spray) under your tongue and hold it there for 2 minutes. It tastes urgh but it's only for 2 minutes and it's a small price to pay so I'm not worried about that. There are apparently very good reasons for holding the oil under the tongue, it allows the active ingredients of CBD oil to be directly absorbed through the mucous membrane in the mouth. There are lots of capillaries, or tiny blood vessels, under the tongue which transfer directly into the bloodstream. When the CBD is absorbed under the tongue, it bypasses the digestive system and processing of the liver; therefore, the effects of CBD oil are not decreased by digestion. Sublingual application allows CBD to quickly enter the bloodstream and interact with the endocannabinoid system. I feel great, energy has picked up about 20 minutes after I took it. I'm not hungry :)
Day 2 1 spray again at about 11amish I am feeling great again. I really do have that energy and my sight seems to be feeling brighter, not in a weird spaced out way but in a brain fog clearing way
Day 3 1 spray again at about 11ish, I can definately feel as though the brain fog is lifting for a few hours during the day, I am feeling normal. Not for the whole time I still have to sleep but it's absolutely giving me more good energy.
Day 4 1 spray again, OK energy levels have increased. Done 2 workouts, walked for an hour and a half, most of that time listening to my Spanish (getting the grey matter back to work with some language). The brain fog for a chunk of the day is clear and I am for those few hours normal again.
Day 5 Oops overdid it yesterday and then last night I stayed up too late youtubing videos of studies on this stuff and it's results, it's fascinating and exciting. I've woken up shattered and with a banging headache,. I've taken a second spray today at about 5pmish, the information says the results last about 9 hours and that eventually I should be taking 1 or 2 sprays 3 times a day for the best effects. Lazy day today I think, when will I ever learn to take things gently?!
Day 6 2 sprays 1 first thing in the morning when I wake up and a 2nd at 4.30ish. I've been great today, Been for a nice walk (rather than a route march) done a good workout (just one, not two). Brain is feeling clear and I feel like I'm starting to remember normal stuff.
Day 7 2 sprays again, had a great nights sleep and woken up feeling refreshed. This stuff and the vitamin b are definately working, this cannot be a fluke. Oh I am so happy I could cry again. I can't believe that I am doing this to myself and I cannot believe that one week in of the CBD and I am feeling like this is going to work. This is really the first time since this all started that I am able to look forward and see a healthy and more normal future. Excuse me while I shed a few happy tears again. (now I'm going to be honest here, I wrote this last night before I went to bed, and I really did wake up feeling refreshed :) )
I've done more reading on my seizures too, both types, the dizzy spells are petit mal and one of the things of these is a feeling of deja vu, well strangely this happens and I honestly just thought it was me being weird, nope that's petit mal and also keppra!!!
I don't really want to read too much on the gran mal, they are scary and the information tells you that people die from them, I don't want to know!
Also CPRS complex regional pain syndrome (I don't have the pain) but this is another name for brain fog. Symptoms, poor memory and lack of concentration. Hahaha I have those by the bucket loads
So just by simply getting off the chemicals and replacing them with a vitamin b and a few drops of CBD a day I could clear all of this lot up. Seems like a potential miracle or too good to be true, I think I'd rather stick with the miracle thoughts for now while I can still get away with it :)
I've gone back through some of my first posts about natural foods and spices, so my bedtime drink has gone back to camomile tea with turmeric and cinnamon. My coconut oil with jasmine and frankincense is not only my nightly face cream it's only massaged into my dry scalp twice a week. It feels just lovely to have a head massage done by me, that should help with stopping the tumour regrow (coconut oil is supposed to shrink them), help with the sleep, not that I really have any trouble with that (the jasmine) and help with the brain function (thanks to frankincense).
I wonder if any of this natural magic will improve my eyesight and hearing??? Miracles can happen and what a learning curve this is.
Just before I finish off for the week, every time I switch on the TV it seems to be covering something to do with brain tumours, seizures or CBD. I feel like I'm being watched over or given some sort of warning or talk! What is going on in the world???
Happy Monday everyone :)
I hope I've found 3 companies that seem to be brilliant and incredibly helpful. I am putting some links below of some of the incredible stories that have brought me to tears and given me hope that I can be myself again
https://www.youtube.com/watch?v=S9qkYLtAhSQ
http://www.dailymail.co.uk/health/article-4865170/Woman-claims-cannabis-oil-CURED-brain-tumour.html
http://www.dailymail.co.uk/health/article-5523165/Sir-Patrick-Stewart-supporting-boy-given-cannabis.html
The companies I've decided to use which have amazing reviews and are so helpful are below.
https://cbdbrothers.com/
https://www.lovecbd.org/product/800mg-cbd-entourage-oil-spray/ This is what I'm using now
https://www.cbdoilsuk.com/product/charlottes-web-everyday-advanced-500-hemp-extract/
Day 1 one spray at about 11am, no idea why I took it at that time although I do know it should be taken about 2 hours away from the anti seizure meds. I have read just about everywhere that the way to take this is to put the drop (or spray) under your tongue and hold it there for 2 minutes. It tastes urgh but it's only for 2 minutes and it's a small price to pay so I'm not worried about that. There are apparently very good reasons for holding the oil under the tongue, it allows the active ingredients of CBD oil to be directly absorbed through the mucous membrane in the mouth. There are lots of capillaries, or tiny blood vessels, under the tongue which transfer directly into the bloodstream. When the CBD is absorbed under the tongue, it bypasses the digestive system and processing of the liver; therefore, the effects of CBD oil are not decreased by digestion. Sublingual application allows CBD to quickly enter the bloodstream and interact with the endocannabinoid system. I feel great, energy has picked up about 20 minutes after I took it. I'm not hungry :)
Day 2 1 spray again at about 11amish I am feeling great again. I really do have that energy and my sight seems to be feeling brighter, not in a weird spaced out way but in a brain fog clearing way
Day 3 1 spray again at about 11ish, I can definately feel as though the brain fog is lifting for a few hours during the day, I am feeling normal. Not for the whole time I still have to sleep but it's absolutely giving me more good energy.
Day 4 1 spray again, OK energy levels have increased. Done 2 workouts, walked for an hour and a half, most of that time listening to my Spanish (getting the grey matter back to work with some language). The brain fog for a chunk of the day is clear and I am for those few hours normal again.
Day 5 Oops overdid it yesterday and then last night I stayed up too late youtubing videos of studies on this stuff and it's results, it's fascinating and exciting. I've woken up shattered and with a banging headache,. I've taken a second spray today at about 5pmish, the information says the results last about 9 hours and that eventually I should be taking 1 or 2 sprays 3 times a day for the best effects. Lazy day today I think, when will I ever learn to take things gently?!
Day 6 2 sprays 1 first thing in the morning when I wake up and a 2nd at 4.30ish. I've been great today, Been for a nice walk (rather than a route march) done a good workout (just one, not two). Brain is feeling clear and I feel like I'm starting to remember normal stuff.
Day 7 2 sprays again, had a great nights sleep and woken up feeling refreshed. This stuff and the vitamin b are definately working, this cannot be a fluke. Oh I am so happy I could cry again. I can't believe that I am doing this to myself and I cannot believe that one week in of the CBD and I am feeling like this is going to work. This is really the first time since this all started that I am able to look forward and see a healthy and more normal future. Excuse me while I shed a few happy tears again. (now I'm going to be honest here, I wrote this last night before I went to bed, and I really did wake up feeling refreshed :) )
I've done more reading on my seizures too, both types, the dizzy spells are petit mal and one of the things of these is a feeling of deja vu, well strangely this happens and I honestly just thought it was me being weird, nope that's petit mal and also keppra!!!
I don't really want to read too much on the gran mal, they are scary and the information tells you that people die from them, I don't want to know!
Also CPRS complex regional pain syndrome (I don't have the pain) but this is another name for brain fog. Symptoms, poor memory and lack of concentration. Hahaha I have those by the bucket loads
So just by simply getting off the chemicals and replacing them with a vitamin b and a few drops of CBD a day I could clear all of this lot up. Seems like a potential miracle or too good to be true, I think I'd rather stick with the miracle thoughts for now while I can still get away with it :)
I've gone back through some of my first posts about natural foods and spices, so my bedtime drink has gone back to camomile tea with turmeric and cinnamon. My coconut oil with jasmine and frankincense is not only my nightly face cream it's only massaged into my dry scalp twice a week. It feels just lovely to have a head massage done by me, that should help with stopping the tumour regrow (coconut oil is supposed to shrink them), help with the sleep, not that I really have any trouble with that (the jasmine) and help with the brain function (thanks to frankincense).
I wonder if any of this natural magic will improve my eyesight and hearing??? Miracles can happen and what a learning curve this is.
Just before I finish off for the week, every time I switch on the TV it seems to be covering something to do with brain tumours, seizures or CBD. I feel like I'm being watched over or given some sort of warning or talk! What is going on in the world???
Happy Monday everyone :)
Monday, 19 March 2018
Trying to be proud of myself and look into the future
So in this weird, horrible in many ways, past 7 months I seem to have achieved a LOT. I have read and studied, I have passed 3 courses and am now qualified in various different things and am hopefully almost ready to move on to my next chapter of a new working life. I am a qualified meditation person, a qualified natural therapist and a qualified hypnotherapist, WOW not bad brain tumour woman :)
I've said this before that it's easy to look down on myself and sometimes others and even though this has been a really shit time with the tumour, the surgery, the seizures, the fear of every day life and blah blah blah, I'm doing OK and deserve a pat on the back.
Family have been a massive part of that, my girls! where do I start, these young women make me incredibly proud to be their mother every day. As mothers I feel that most of us just do our best, we want the best for our children but as there are no lessons of parenting we just do what we think is right. Sometimes this is good, sometimes not quite so good. When our beautiful children become vile teenagers (yes they nearly all do and both mine definately did) there is nothing we can do apart from pick them up and give them a damn good telling off, it'll take about 5 years for that telling off to sink in. When these vile teenagers grow out of this vile stage and magically turn into adults all we can do is hope for the best. Well ladies and gentlemen, I have absolutely no idea how it happened but my young women are awesome, they are bright, funny, caring, responsible and they have taken the best care and control of their poorly mother. They tell me off like I am the child sometimes, they cry with me, laugh with me and make me feel safe. I like to be sure that a great deal of that has come from their upbringing, not just from me but from their father and grand parents. I can't take all of the credit but I will enjoy every ounce of pride, they are my girls and I adore them and who they are. I am so very lucky to have them.
I'm also lucky to have an amazing group of friends. It's true that you learn who your friends are when the chips are down and it's also a really tough time to let the crappy ones go, it's upsetting to know that you've let selfish people become important to you but once you release them it's like a weight lifted off your shoulders, well it is once you've got over the hurt and then the anger (that hangs on for quite a while). My friends have been kind, caring, worried, funny and amazing. Again, I don't know how I have managed to surround myself with such awesome people, now, when I say surround myself, my friends are all over the place because I worked all over the place. They are still there though, on the phone or some sort of messenger. They lift me up when I need it, they bring me back down to earth when I am having a mad moment and they are just there when I need them. Even on a Friday night in front of gogglebox I am with my amazing friend even though she is on her sofa in Spain we are together and that is a very warm and comforting feeling. I am lucky.
So what am I going to do with my new skills? I have a plan, it's going to take a while to make come together but a plan is a plan. For the first time ever I want to help others find a way to help themselves. I want to help people to control their fear, pain and stress just by relaxing and now I almost have all the tools to do this. I want to teach people to relax, doctors, nurses, medical staff, teachers (that's my starting point) these people are so busy, so stretched and stressed and never get enough thanks for the amazing and hard jobs they do. I want to try and help them, it'll be a good platform for me to start I hope.
BTW last week I spoke about the vitamin B well I don't know if it's too early for me to feel any difference but I honestly feel that I have times of the day with no brain fog, it feels amazing. I've also started the new CBD entourage oil www.lovecbd.org I feel energised, awake and can see without a fog over my head, really is this possible so early on? I don't know but I do know that I am loving this feeling.
My final words this week are exercise, I love exercise, I am (or was) a full on gym bunny, I love a noisy, busy, hard working class, especially spinning and now there's no way I can do one, I miss it madly. Even walking past a gym can bring me to tears (ridiculous I know) but it was a massive part of my life and now I can't even go swimming!!! So I've returned to an old favourite, it looks and seems a bit weird to start with but once you get past the original creator (who looks a bit like a crazy lady in a very small leotard) it's a brilliant, gentle but good workout, I've got all of the downloads and I'm now doing one every day, I get the tiniest bit of dizziness when it comes to the laying down part of the programme but I stop, wait for the dizzy to go and then I start again. If you do have a look, the daughter Aubrey is fantastic and I much prefer her (not crazy) sessions. www.oxycise.com
Onwards and upwards we go, have a great week :)
I've said this before that it's easy to look down on myself and sometimes others and even though this has been a really shit time with the tumour, the surgery, the seizures, the fear of every day life and blah blah blah, I'm doing OK and deserve a pat on the back.
Family have been a massive part of that, my girls! where do I start, these young women make me incredibly proud to be their mother every day. As mothers I feel that most of us just do our best, we want the best for our children but as there are no lessons of parenting we just do what we think is right. Sometimes this is good, sometimes not quite so good. When our beautiful children become vile teenagers (yes they nearly all do and both mine definately did) there is nothing we can do apart from pick them up and give them a damn good telling off, it'll take about 5 years for that telling off to sink in. When these vile teenagers grow out of this vile stage and magically turn into adults all we can do is hope for the best. Well ladies and gentlemen, I have absolutely no idea how it happened but my young women are awesome, they are bright, funny, caring, responsible and they have taken the best care and control of their poorly mother. They tell me off like I am the child sometimes, they cry with me, laugh with me and make me feel safe. I like to be sure that a great deal of that has come from their upbringing, not just from me but from their father and grand parents. I can't take all of the credit but I will enjoy every ounce of pride, they are my girls and I adore them and who they are. I am so very lucky to have them.
I'm also lucky to have an amazing group of friends. It's true that you learn who your friends are when the chips are down and it's also a really tough time to let the crappy ones go, it's upsetting to know that you've let selfish people become important to you but once you release them it's like a weight lifted off your shoulders, well it is once you've got over the hurt and then the anger (that hangs on for quite a while). My friends have been kind, caring, worried, funny and amazing. Again, I don't know how I have managed to surround myself with such awesome people, now, when I say surround myself, my friends are all over the place because I worked all over the place. They are still there though, on the phone or some sort of messenger. They lift me up when I need it, they bring me back down to earth when I am having a mad moment and they are just there when I need them. Even on a Friday night in front of gogglebox I am with my amazing friend even though she is on her sofa in Spain we are together and that is a very warm and comforting feeling. I am lucky.
So what am I going to do with my new skills? I have a plan, it's going to take a while to make come together but a plan is a plan. For the first time ever I want to help others find a way to help themselves. I want to help people to control their fear, pain and stress just by relaxing and now I almost have all the tools to do this. I want to teach people to relax, doctors, nurses, medical staff, teachers (that's my starting point) these people are so busy, so stretched and stressed and never get enough thanks for the amazing and hard jobs they do. I want to try and help them, it'll be a good platform for me to start I hope.
BTW last week I spoke about the vitamin B well I don't know if it's too early for me to feel any difference but I honestly feel that I have times of the day with no brain fog, it feels amazing. I've also started the new CBD entourage oil www.lovecbd.org I feel energised, awake and can see without a fog over my head, really is this possible so early on? I don't know but I do know that I am loving this feeling.
My final words this week are exercise, I love exercise, I am (or was) a full on gym bunny, I love a noisy, busy, hard working class, especially spinning and now there's no way I can do one, I miss it madly. Even walking past a gym can bring me to tears (ridiculous I know) but it was a massive part of my life and now I can't even go swimming!!! So I've returned to an old favourite, it looks and seems a bit weird to start with but once you get past the original creator (who looks a bit like a crazy lady in a very small leotard) it's a brilliant, gentle but good workout, I've got all of the downloads and I'm now doing one every day, I get the tiniest bit of dizziness when it comes to the laying down part of the programme but I stop, wait for the dizzy to go and then I start again. If you do have a look, the daughter Aubrey is fantastic and I much prefer her (not crazy) sessions. www.oxycise.com
Onwards and upwards we go, have a great week :)
Tuesday, 13 March 2018
Where do I go next?
I'm in a bit of a turmoil. Last week I decided to pop into the city centre (on my own) to pick up some bits and pieces, nothing needed but some time not to sit at home by myself. I had a funny turn in a shop, found a member of staff and said "I'm sorry, I have epilepsy and I don't feel well, please help me", thankfully the member of staff I found was a first aider with experience of epilepsy and was amazing, took me to a cool room, got me a drink and sat with me while I calmed down and thank goodness didn't have a full seizure. But once again this got me thinking about my medications. I have cried today with the fright, disappointment and these bloody meds that I hate. So I have read and read and read until my head is hurting and have possibly come up with a couple of long term solutions. Read on for the pros and cons of the meds and their possible replacements. Why oh why when you are put on these meds nobody tells you what the natural possible alternatives are? Why oh why can't the pharmactutical companies work together with the natural companies to create a medicine that doesn't create further issues and give us something more natural that works with our bodies and minds rather than against it. It's the frustration that makes me cry. I want to be strong, I want to take the bull by the horns and stop this from taking over the me that I actually really like.
Keppra, anti seizure medication, makes me feel awful, muddles my brain, apparently because even though it is helping to control the seizure it is also rotting my brain, making me exhausted while stopping my memory from working and causing me to be miserable. This medication also effects the way you body absorbs nutrients and some vitamins, particularly vitamin b.
CBD oil, massively popular at the moment as a potential saviour for epileptics, cancer patients, pain relief, psoriasis. There seem to be a million pros for this but the cons are that they are not medically accepted by many in the medical community for understandable reasons. This means that if you take it, you take it under your own steam with little or no backup from your medical team. It will test positive if you are drug tested, now for me that makes no difference because nobody is likely to drug test me but for many people who need to have clear drug testing for work this is a problem!!!
SSRI antidepressants. Given for obvious reasons, misery being my main one. I could be wrong here and probably am but it seems like we hear daily about mental health issues and how so many people suffer with them, I never (until now) thought I had a mental health issue that I couldn't sort out myself by getting together with good friends, going for a good walk, going to the gym or sitting down with a cuppa and a good book. I have never wanted to take anti depressants and begrudge that I am taking them now, possibly unnessecarily as I may be able to solve these issues with vitamin B and folic acid!
Vitamin B complex. Sooooooooooo here goes, vitamin b (particularly b6 is one of the massive brain helping vitamins, it helps the brain think, focus, remember and cognitively work. Vitamin B6 deficiency can induce anemia, abnormal brain activity, mood disorders, muscle twitching and seizures. Vitamin B6 deficiency also weakens your immune system. Folic acid deficiency can lead to anemia, heartburn, diarrhea, constipation, frequent infections, depression, mental confusion and fainting. Vitamin B12 deficiency produces anemia, fatigue and hypersensitivity, and degenerates your nervous system, leading to paralysis. With this little lot no wonder I feel like rubbish most of the time ! This information came from https://www.livestrong.com/article/483285-how-much-vitamin-b-complex-should-a-person-take-in-a-day/
Vitamin B is suppressed by keppra! So I need to find a vitamin B complex that includes B6, B12 to help improve my lagging eyesight, memory and B9 all of them to help the brain to function and the hair and nails to grow and to improve energy levels. Vitamin B you are going to be my best friend soon and for that I will love you :)
More information on Vitamin B9 is here and makes a great read https://www.organicfacts.net/folic-acid.html
So my thought process is this, start taking vitamin B complex so that I can wean off the anti depressant (slowly) while this is happening my brain fog can start to clear, my memory can improve and I can start to think like a normal person again. The B complex also assists hair and nail growth (great for my lost hair). Apparently the vitamin B has to be taken at the same time daily (like keppra) for it to work effectively. That's good to know.
Next is to start very very slowly on the CBD oil, and very very slowly (over about a year) cut down and hopefully eventually out the keppra. So that in theory by the end of the next 12 months the only things I will be taking is natural CBD oil and a vitamin B compex. Fingers (with long and strong nails) crossed for this, it's scary but I really really want to find a way to get off the chemical drugs that I feel are potentially long term doing me more harm than good. Fingers crossed
Keppra, anti seizure medication, makes me feel awful, muddles my brain, apparently because even though it is helping to control the seizure it is also rotting my brain, making me exhausted while stopping my memory from working and causing me to be miserable. This medication also effects the way you body absorbs nutrients and some vitamins, particularly vitamin b.
CBD oil, massively popular at the moment as a potential saviour for epileptics, cancer patients, pain relief, psoriasis. There seem to be a million pros for this but the cons are that they are not medically accepted by many in the medical community for understandable reasons. This means that if you take it, you take it under your own steam with little or no backup from your medical team. It will test positive if you are drug tested, now for me that makes no difference because nobody is likely to drug test me but for many people who need to have clear drug testing for work this is a problem!!!
SSRI antidepressants. Given for obvious reasons, misery being my main one. I could be wrong here and probably am but it seems like we hear daily about mental health issues and how so many people suffer with them, I never (until now) thought I had a mental health issue that I couldn't sort out myself by getting together with good friends, going for a good walk, going to the gym or sitting down with a cuppa and a good book. I have never wanted to take anti depressants and begrudge that I am taking them now, possibly unnessecarily as I may be able to solve these issues with vitamin B and folic acid!
Vitamin B complex. Sooooooooooo here goes, vitamin b (particularly b6 is one of the massive brain helping vitamins, it helps the brain think, focus, remember and cognitively work. Vitamin B6 deficiency can induce anemia, abnormal brain activity, mood disorders, muscle twitching and seizures. Vitamin B6 deficiency also weakens your immune system. Folic acid deficiency can lead to anemia, heartburn, diarrhea, constipation, frequent infections, depression, mental confusion and fainting. Vitamin B12 deficiency produces anemia, fatigue and hypersensitivity, and degenerates your nervous system, leading to paralysis. With this little lot no wonder I feel like rubbish most of the time ! This information came from https://www.livestrong.com/article/483285-how-much-vitamin-b-complex-should-a-person-take-in-a-day/
Vitamin B is suppressed by keppra! So I need to find a vitamin B complex that includes B6, B12 to help improve my lagging eyesight, memory and B9 all of them to help the brain to function and the hair and nails to grow and to improve energy levels. Vitamin B you are going to be my best friend soon and for that I will love you :)
More information on Vitamin B9 is here and makes a great read https://www.organicfacts.net/folic-acid.html
So my thought process is this, start taking vitamin B complex so that I can wean off the anti depressant (slowly) while this is happening my brain fog can start to clear, my memory can improve and I can start to think like a normal person again. The B complex also assists hair and nail growth (great for my lost hair). Apparently the vitamin B has to be taken at the same time daily (like keppra) for it to work effectively. That's good to know.
Next is to start very very slowly on the CBD oil, and very very slowly (over about a year) cut down and hopefully eventually out the keppra. So that in theory by the end of the next 12 months the only things I will be taking is natural CBD oil and a vitamin B compex. Fingers (with long and strong nails) crossed for this, it's scary but I really really want to find a way to get off the chemical drugs that I feel are potentially long term doing me more harm than good. Fingers crossed
Wednesday, 7 March 2018
Memory & how to fix it
My memory has become shocking and I know this is partly age (urgh yep that dreaded word) and party because my brain either forgets how to work or is too tired to be bothered to, there is also the effect of the keppra, which is massively important but I hate the effects of.
I am desperate to improve my memory and try and get my brain back to work, there are a few things I'm looking at, 1 the brain training games, which seem to be good but I feel so tired after doing them for a few days, foods as always is a factor but I have now massively cut down sugar and bad fats, added in the turkey and walnuts and purple fruits, I'm burning aromatherapy rosemary (which is known to improve memory) and peppermint (known for headaches) oils - my home smells beautiful and I have meditation music which is meant to increase concentration whenever I'm reading or writing or working so what else is there???
I'm still studying hypnotherapy at the moment and have just taken a small break for a cuppa and have come across a hypnotherapy session for memory improving, that is definitely going to be worth working on and I will get a session recorded by my own dulcet tones to work on. I love the thought the hypnosis can help with so many things from pain relief to weight loss to relaxation and life improvement to phobia treatment. The course I've been studying has probably been the hardest thing I've ever had to learn and I am really struggling with my final module and exam. There is so much information to retain, thank goodness I've got it all written so that I can go back to it and will do once I've passed this course and get working. I am excited at the prospect of starting a new career that I can build while I'm recovering without causing myself too many problems and stress. I'm excited at the prospect of having a toolbox to help others help themselves using natural therapies and exercises, I truly believe that there are a million ways of helping ourselves without expensive, body killing chemical drugs. In the meantime I am going to get working on my brain and get the old grey cells working a little bit harder without wearing them out. A new start is on the way and it's exciting and a little bit nerve wracking.
Learning a new language is said to be great to improve your brain age and help your brain to focus and function. Recent studies have shown this to be true too. Bilinguals are said to have better decision making skills, improved memory, better attention, processing skills, cognitive abilities, bigger brains and a delayed onset of amnesia https://www.iwillteachyoualanguage.com/9-health-benefits-of-learning-a-foreign-language/ I loved speaking Spanish when I lived in Spain, I realised when I went back for a visit that I've lost a lot of my Spanish, this titbit of info is getting me back to my Spanish learning, bring it on duolingo, you are being reloaded :)
Art, now here's something that's new info for me. For those people who struggle to concentrate or their brains work differently (I think that goes for a lot of us with brain injury, surgery or just not working quite right) art is a great stimulant to increase and improve the brain function. It gets the brain working without the stress of making it think and is a great stress reducer. So that's something else for me to do, I've fancied getting one of those paint by numbers sets for a long time, this might just be the perfect reason, put some great music on and get the paint out. I love that idea
More info on how are and creativity helps the brain function is on this website https://www.healing-power-of-art.org/art-and-the-brain/
So new learnings are afoot, good books, lovely walks, coffee with friends and family, theatre trips planned (I love the theatre and plan to go more and more), I might as well enjoy this time while it lasts :)
I am desperate to improve my memory and try and get my brain back to work, there are a few things I'm looking at, 1 the brain training games, which seem to be good but I feel so tired after doing them for a few days, foods as always is a factor but I have now massively cut down sugar and bad fats, added in the turkey and walnuts and purple fruits, I'm burning aromatherapy rosemary (which is known to improve memory) and peppermint (known for headaches) oils - my home smells beautiful and I have meditation music which is meant to increase concentration whenever I'm reading or writing or working so what else is there???
I'm still studying hypnotherapy at the moment and have just taken a small break for a cuppa and have come across a hypnotherapy session for memory improving, that is definitely going to be worth working on and I will get a session recorded by my own dulcet tones to work on. I love the thought the hypnosis can help with so many things from pain relief to weight loss to relaxation and life improvement to phobia treatment. The course I've been studying has probably been the hardest thing I've ever had to learn and I am really struggling with my final module and exam. There is so much information to retain, thank goodness I've got it all written so that I can go back to it and will do once I've passed this course and get working. I am excited at the prospect of starting a new career that I can build while I'm recovering without causing myself too many problems and stress. I'm excited at the prospect of having a toolbox to help others help themselves using natural therapies and exercises, I truly believe that there are a million ways of helping ourselves without expensive, body killing chemical drugs. In the meantime I am going to get working on my brain and get the old grey cells working a little bit harder without wearing them out. A new start is on the way and it's exciting and a little bit nerve wracking.
Learning a new language is said to be great to improve your brain age and help your brain to focus and function. Recent studies have shown this to be true too. Bilinguals are said to have better decision making skills, improved memory, better attention, processing skills, cognitive abilities, bigger brains and a delayed onset of amnesia https://www.iwillteachyoualanguage.com/9-health-benefits-of-learning-a-foreign-language/ I loved speaking Spanish when I lived in Spain, I realised when I went back for a visit that I've lost a lot of my Spanish, this titbit of info is getting me back to my Spanish learning, bring it on duolingo, you are being reloaded :)
Art, now here's something that's new info for me. For those people who struggle to concentrate or their brains work differently (I think that goes for a lot of us with brain injury, surgery or just not working quite right) art is a great stimulant to increase and improve the brain function. It gets the brain working without the stress of making it think and is a great stress reducer. So that's something else for me to do, I've fancied getting one of those paint by numbers sets for a long time, this might just be the perfect reason, put some great music on and get the paint out. I love that idea
More info on how are and creativity helps the brain function is on this website https://www.healing-power-of-art.org/art-and-the-brain/
So new learnings are afoot, good books, lovely walks, coffee with friends and family, theatre trips planned (I love the theatre and plan to go more and more), I might as well enjoy this time while it lasts :)
Subscribe to:
Posts (Atom)